Thursday, November 13, 2014

holding on to the gift of seeing

Lucy hasn't been able to see at night for a long time.  When we are in a new place she reaches out for one of our hands and clings to us as she uses her feet to reach out in front of her and feel around for steps or any obstacles in her way.  Whoever is holding her hand will walk her through where she's going, "two more steps...now there's a big step...it's ok, this part is straight for a long time."

Her beautiful blue eyes look right through us.

It has become such a normal routine for us that we hardly blink an eye about it...until someone outside our family is with us and realizes why we're walking so slow.  Their eyes full of compassion tell me, even if they don't say the words out loud: "I'm so sorry."

It's ok.  We are used to it.  Lucy is gaining confidence getting around and even though she can't see, she's never scared.  She is learning to use her other senses well.

But lately, as we have spent so much time in unfamiliar territory in different countries, we have realized that Lucy is starting to lose her day-time vision too.  Sometimes she will reach her toes out to feel where she's going even if there's just a shadow she thinks might be a step.  And other times, when she's not paying enough attention skipping gleefully with her siblings through new places, she trips and falls.

Her peripheral vision is failing her even in broad daylight.

We're not used to that yet.  So sometimes it takes my breath away.  Dave and I try to act all normal about it in front of the other kids.  "It's ok, let's just help her out a little more," we say to them confidently when they look to us, their eyes full of worry.   But the tears prick behind my eyelids and my heart stops.  And I know, as I catch Dave's knowing eye, that his stomach is churning.

There are many worse things in the world than blindness.  I have heard many a story about blind people who live wonderfully fulfilling and happy lives.  But we want Lucy to see!

Sometimes the thing that soothes my worries the very most is being here on this adventure with our whole family together.  When we were on a boat in the middle of Ha Long Bay in Vietnam I sat on the deck watching Lucy as the warm sun rays made the sky hazy against the breathtaking backdrop.

I marveled that she gets to SEE that, now while she still can.

I love that she got to see the Great Wall, traipsing up and down hundreds of stairs holding one of our hands, her eyes looking out on the gorgeous fall world spreading out from us.

I love that she got to see an elephant up close and personal on her birthday.


I don't take any of that for granted.  

I think about those eyes of hers and how they can see every time they get to see something new.

Something she may not get to see later in her life.

And gratitude wells up inside me and makes me want to fight even harder to keep the vision she has.  And to help other kids keep their vision too.  I know there is a way.  Researchers are making such great strides and because of the help of so many great blog readers and a whole slew of fund raising the BBS registry is in the works so those researchers will be able to take specific BBS needs into consideration.  (The registry video explaining it all is HERE.)  But this takes a lifetime of work so we will always be fundraising.  Other families are fundraising too and have been able to donate a great deal to help the BBS community.  (Click HERE to see what some have been doing.)

Which brings me to the 4th Annual Turkey Trot coming up on Thanksgiving.  Even though we are on the other side of the world, Dave has been working tirelessly with the Turkey Trot team back in the states and this year it is going to be bigger and better than ever.  They are doing the run at a local mall instead of the retention basin and there are some amazing sponsors and so many volunteers willing helping out in the whole process.

It is exciting.

One hundred percent of the proceeds will be divided evenly to help two causes:  a great organization called Brain Food and the I Love Lucy Project.  I just want to be sure everyone local is aware because it's going to be fun day, and early registration ends on the 16th (next week).


Click HERE for all the information about the run and to sign up.

Even though we can't be there, you can bet we'll figure out some sort of run we can do over here.

Click HERE for more information about Lucy and to donate specifically to the I Love Lucy cause (which benefits all BBS kids because all donations go directly to the registry and research).

I know there is a cure in sight.  I know researchers are working their tails off to keep kids like Lucy seeing the gorgeous world around them.  And I just want to push that any way I can.

Thank you for loving Lucy so much and for all the support through the years.  We are forever grateful.  

9 comments:

  1. ugh reading this breaks my heart. She is very lucky to be in your family and be able to see so many beautiful things. I hope they can find a cure and Lucy will be able to see many more beautiful things for years to come.

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  2. This post is for all those people who thought you were mad or wrong to take your family on such a wild and exciting adventure. They were all wrong.

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  3. Breaks my heart too. I'm so happy for all of the new things she will have been able to see this semester...

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  4. Wow! How wonderful that you get to have these adventures together as a family... can't wait until we get to visit China and Southeast Asia. I'll tell my family about the Turkey Trot, they are in Salt Lake.

    Love from our family to yours!

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  5. Oh man. That just makes me feel so much more grateful for little things. Thank you for sharing so much of your life and thoughts and ideas with the rest of us. I love that you took your family to China for so many reasons, and you have given me yet another.

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  6. I read your post this morning and happened to listen to this while coking dinner tonight and thought of you. http://www.mormonchannel.org/enduring-it-well/34

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  7. So glad that you are giving Lucy this experience!

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  8. I am so glad Lucy is getting this chance to fill her visual 'card catalog'.

    I was thinking of how much she loves to draw...has she tried sculpting? Paper, clay, play doh even?

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  9. What a lucky little girl to be in your family. Our situation is not the same as yours and not near as dire but I watch my son struggle to see things daily. I know that "stomach churning" feeling and the hot, prickling, tears behind the eyes burn. I hate the uncertainty of the future for these kids. But like you, I don't take much for granted when it comes to vision.

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